My husband, who for the most part is very calm and sweet, rarely angry, never aggressive is unfortunately, too loving. He likes to put his arms around women and kiss them on the cheek. Sometimes he knows these women and sometimes he doesn’t. Sometimes he holds on a little too long. Occasionally, he pats one on the bottom or makes personal comments such as “You’re gorgeous”, or “I like your body”. In general, except for the bottom patting or the body comments, no one gets too upset. Well, no one except the staff at day care. They are afraid he will hurt another client and have told me that if I can’t get him under control they will have to ask that he not come back. He goes to day care three days a week. I should also add that we live in an Independent Apartment in a continuing care community and usually eat dinner in a joint dining room. The behavior also happens here. Our geriatrician/PCP has been trying to find a medication that might help with this. He started Bob on Cimetidine. It seemed to help for a couple of months, but the behavior has picked up again. Next the doctor wanted to try intramuscular injections of Medroxyprogesterone Acetate. This has been shown to be effective in only a few case studies. Our insurance won’t pay for it, because it is not approved for Bob’s condition. In fact, it is only approved for females.
We had an appointment with the neurologist last Thursday, and I asked him about the issue. He suggested Seroquel. He also said to take Bob off the Cimetidine, that it had bad interactions with Namenda, Aricept, and Seroquel. On the way home, we stopped at the pharmacy, where the pharmacist told us his program from Mayo showed no negative interactions with any of those drugs. Since I was then thoroughly confused, I decided to go home and call the PCP.
After a 30-minute drive home, during which Bob read aloud every license plate, street sign, billboard, and mail box number, plus commenting on everything else that was going on, I listened to phone messages. There was one from one of the receptionists at the PCP's office. I returned it immediately. She was calling to tell me that the appointment I had scheduled for myself at 9:00 on Monday would have to be changed to 4:00. Given my state of mind at the time, I said that no it wouldn't be changed; that I had an appointment at 9:00 and that's when I was coming. She disagreed with me. I told her that Bob was at daycare from 8:30 to 3:00 and that's when I had to come. She said I could come on Tuesday afternoon. I said I couldn't, because Bob didn't go to daycare on Tuesday, and I didn't want to bring him with me. Then she said that my appointment would have to wait until June. I said it would not, that I would be there at 9:00 on Monday morning. Obviously, I'm in bad shape. I have never argued like that before. I told her I was absolutely falling apart, that I needed to see the doctor, and I was not waiting until June. I now have an appointment at 11:00 on Wednesday. Before we hung up, I told her that I wanted to talk to the nurse or the doctor about the issue with Bob's medication. Neither one was available. (More in next message).
I can see why your so upset. Does your DH have Frontotemporal Dementia? They get really dis inhibited and can get out of hand. My DH has some form of it, I'm not sure which but he is overly friendly with everyone and I have to step in sometimes and move him on. The Alzheimer's society here gave us card with their name on the back and a note on the other side that says" My companion has an illness that causes memory loss,confusion and changes in Behaviour. your understanding is appreciated" I have had to give it to staff in restaurant and many other place and also to people that he became overly friendly with or aggressive with. It's not much but it has helped with my embarrassment and they just seem to slip away. He is now in a very quiet none aggressive place, for how long, who knows, and the overly friendly fellow is much quieter, for now!! I hope they find a med that can help to make things easier for you and for him.
I talked to the geriatrician's nurse on Friday. She said to start the Seroquel, and NOT to stop the Cimetidine. Obviously, Seroquel does not take effect immediately. We started it on Friday night. Saturday morning we stopped at Walgreens to get some paper to wrap a birthday present. On the way into the store, we passed a young woman. Bob said to me, but loudly enough that she heard, "She's gorgeous, even if she is black." I couldn't believe it. I have never, in 46 years, heard him make a racist comment. In the store, while I was looking at wrapping paper, he walked over to a stranger, hugged and kissed her and told her she was gorgeous. I explained and apologized. she was very nice about it and told Bob it was nice to meet him. At the check-out three young women were working. Bob said, "Wow! Three more gorgeous women." He started looking at magazines, so I asked if he wanted one. He said he wanted all the ones with cleavage.
How long does it take for seroquel to start working? It all seems funny now, but it wasn't at the time. By the way, he also reached over while I was driving and turned the steering wheel. I'm never taking him anywhere again (that may be a little extreme, but it's how I feel right now).
Janet, I don't have any experience with this, but I do offer you my sympathy. If I were in your shoes, I think I wouldn't take him out any more until the doctors give me more effective medication to control his behaviour. This could take time, all right. Until that time, If possible and affordable, I'd try to get a male in to stay with him when I needed to go out: a relative or a care aide.
As I read your comments about your husband and his outwardly flirtatious behavior( lacking a filter) I immediately thought "he has frontal temporal disease". If that's the situation (and it could be undiagnosed as many physicians are not educated in this disease) there is little to no medication that will help.
I would suggest, Janet. you go to the top of this board where there is a blue tab (search button) and type in "sex' "hypersexuality" or "FTD" and possibly this will enlighten you about this disease.
Appointments: I have never had any successs talking with the receptionist about rescheduling or changing an appointment. Best to save you time and frustration and go straight to the nurse's voice mail. If you don't hear within 24 hours....get their fax and fax it directly to the doctor saving the confirmation that was received. Document everything no matter how trivia you may believe it is. Doctors need to know how their paid employees are doing their jobs.
We've been told that there are no indications of FTD on his MRI or CAT scan, but I'm included to believe there must be some damage in the frontal lobe. Who knows? I appreciate the suggestion about not getting into an argument with the receptionist. I called her back the next day and apologized. She also lost her husband to dementia, so I think she understood how I was feeling.
Janet, lulliebird has given you good advice to search the sex and hypersexuality topics. My hb has FTD and has gone through the internet porn phase (2+ years....this is a serious situation because he charged a lot of money on a credit card) and has just started the hugging strangers (women) and patting them on the bottom. We too have the cards which tell people he has dementia but the touching of strangers is serious. If someone reports him to security or police they will arrest him even though he has dementia. What if he touches a young child?
My hb is on Seroquel (300mgs/day) and still has this behavior. Hopefully the Seroquel will help your husband. The drug lamictal was suggested recently by a geriatric care manager I hired to help me manage my husband's situation. We haven't tried it but apparently it worked on another dementia patient.
"We've been told that there are no indications of FTD on his MRI or CAT scan"
This is common in early and mid FTD. My wife's MRI and CAT and PET showed nothing unusual 4 years ago. It was so normal looking that it blew away the neurologist who was expecting to see massive holes in her brain.
We will see if anything shows up in her high density MRI scheduled in August. If nothing shows up I might shoot myself.
I have no experience with any of this either Janet, but did want you to know we are here to listen and support you. I imagine you are right and it would depend on what area of the brain is being affect with any of the dementias. I hope your appointment goes well, that your doctor listens to you and offers some help for you. ((hugs))
LFL, I was surprised to see Lamictal was suggested, when I was on it (to prevent seizures) it actually increased my libido. Perhaps it is different with age and dementia?
Janet, I can relate to the reading of license plates, talking talking while in the vehicle. it drove me nuts at times. and mine counted flags, flags. hah. he would scare me to death and get overly excited at the very large ones at car dealerships. grin. man, those days bring back not too pleasant memories. and on the subject of the ladies, I have to agree with you, just not trying to take him out in public until you get this under control. it will only take one lady who isn't so pleasant about his interest in her to cause a stink. and since the filters are off anything can happen. a kiss on the mouth can happen as well grabbing breasts, or crotch cant be ruled out dear janet. until hes mellowed out and you can actually have some peace and awareness how he may react in public I wouldn't do it either. my DH also always tolerant and never racial by any count had a few unpleasantries along the way as well. we just cant be sure what will happen when we don't have any control. its important to try to find the right meds and it takes a lot of work and interactions with drs who are willing to help. sure hope you find something that gives you some peace. if you do take him out put him in back right! side so you can see him lock child locks so he cant open door or windows and seat belts. its very easy for them to grab the wheel or you. divvi
Nikki, like all the meds they use "off-label" for this disease, some work for some, some not. Apparently this gentleman was constantly touching himself in every venue-mornings, at lunch in the full dining room, during activities, and on and on. A nurse suggested the lamactil and it worked. DH has not used it and hopefully we're past this phase, but never say never.
Yes, touching the wrong person could bring on major problems. Before my FIL was diagnosed with AD, we were getting ready to leave. I am not a hugger but my husband's family was - hug and kiss on the cheek. When I went to hug my FIL he kissed me hard on the lips. I was so in shock all I could do is pack the kids up and head back to the west coast as fast as possible. I grew up sexually abused. If it were not my FIL I would have kicked him in the groin and told what he did. If he should get someone who also grew up sexually abused, that could be the one to press charges or react and hurt him.
You are in a tough situation and my heart goes out to all you who have to deal with the sexual issues.
I don't have any experience with Seroquel or Cimetidine; Lamictal was disussed but he (my husband) never got to the point of trying it.
What I do have though, is 12-6 years experience with FTD, depending on how you count it. Like the other posters here, while reading your OP my initial thought was FTD. My husband's public behavior was not really sexual but it became more and more innappropate. Once at a luncheon following a funeral service he grabbed a woman's hand from across the table and told her how beautiful she was and commented on her age. (EDITED TO SAY THAT THIS WAS WHAT HUSBAND SAID- NOT A COMMENT FROM ME!) I was mortified at the time and am also sorry I didn't express this more clearly.
Other things he would do is wave at whomever we would be next to especially at red lights. If they rolled down their window, usually to say something not exactly "have a nice day", he would sometimes give the royal "salute", or make a kissy face, etc.
It didn't take too long for this behavior to escalate and so it got to the point where except for doc appointments he went nowhere. Neither, really did I. Although, I did build it into my plan that when he had a pretty deep nap which would happen before sundowning, I would get out of the house. I had disabled the doorbell, put the phones on silent and locked the doors between the kitchen and pantry and then between there and the garage. I had disabled his car by letting the battery run down and a tire "mysteriously" went flat.
It's a long hard road, especially when the dx may change or docs have different opinions.
Oh dear, Abby, that's exactly what my DH does. Not sexual in nature but overly friendly with everybody. He tells all women they're a cutie pie...yes, even older women. He tells men they are "cool cats" or "Big Daddy" and acts like he knows everybody. He also waves at people when their car pulls up beside us. If I am close enough, I tell them he has Alzheimer's and most everybody just laughs and says it's OK. This is so embarrassing though, and I don't take him out much. You said it didn't take too long for this behavior to escalate. What kind of behavior did it escalate to? I need to be prepared.
In my other message on this topic, where I put that my husband told the woman she was beautiful I should have been more clear- it was he who added "despite the fact that you are old" to his compliment. It was true, she was a striking woman but once upon another life he would have never added a remark about age.
You were spot on: "and acts like he knows everybody". Also, during this time he could start raging at just about anything and his mood could turn on a dime. So, that caused me to make quick decisions and they were not always correct. I think what I mean about escalate is that these behaviors would increase in frequency. Kind of like from teenager down to childhood.
The incident that ended any outing for him other than medical appointments was when he gestured to (of all people) a police officer who was in his own vehicle. Let's just say it was not a show of respect. I was driving and I'll bet not even a fraction of a second passed before I was pulled over.
In one of my worst decisions I had removed his driving license from his wallet. In this state, persons who don't have licenses have to have a photo state or federal id. The only other possibility was his passport and I had hid that as well.
So, the officer is speaking to me, and I tried to explain to him that my husband had dementia (I did not say FTD on purpose). So, speaking for the first time husband looks right at the officer and says "no, I do not". Fortunately, the car was registered to me and my license, insurance were all in order. The car was searched for weapons and illegal substances and nothing was found. As the driver I was cited for having a person without documentation in the car.
Until then, and since then I would have to say that H's inappropriate behaviors continued to increase in frequency but not in intensity. His level of violence had tempered off but his level of threats were pretty much the same. I was not really afraid at any time that he would hurt a stranger. It was more that I feared he would interact with the "wrong" person.
So, whenever he had those necessary appointments my strategy was CANDY- like halloween all for him. So many different minature sized candy bars different wrappers with different colors.....
Ask me anything Dazed; I am glad to help if I can.
Abby if only I could tell you how your experiences above have helped me tonight. I will sleep much better for sure. You are a wonderful caregiver. Hugs
Thank you, everyone, for all of your suggestions. The last two times we've gone out in the car, I've told DH to sit in the back seat, and he did without much discussion. The first time, I told him we had to pick up my sister (which was true) and that I wanted her to sit in the front so I could talk to her. The child safety locks were on, and he was a little confused when he couldn't get out, but I told him that when you ride in the back with a chauffeur, the chauffeur always had to open the door for you. The second time, he asked why you could open the back door from the outside and not from the inside, I said I fixed it that way, because it was safer. He didn't argue.
I had my doctor's appointment this morning. I let him talk me into trying two injections of the medicine he wanted to try even though the insurance won't pay for it. I bought it today, and Bob is getting his first shot tomorrow. By the way, enough for two injections cost $175. The doctor also told me that I need respite NOW. One of the women who works in his office is making phone calls to find places in the area with dementia assisted living units where they provide respite. I am so thankful not to have to do that myself. I like this doctor so much. I told him I felt as if I wasn't doing anything right, and he said I was doing everything exactly right. Wow!
I wish you the best...this caretaking is so overwhelming. Your doctor sounds very wise and caring in that he's opened doors for assistance for respite. I hope that you can get some rest and relaxation during this time.
Abby I must tell you what you did for me that night. That day i had a few bad things going on with DH and I had gone to my room to settle down as I always do before getting him settled for the night. I was on my bed reading the "falling apart in Illinois and I came across your writings and I broke into totally uncontrolled laughter and I just couldn't stop myself. Your description of your dH and the Lady sent me into hysterics. It was so bad that my DH came running into my room to see if I was alright. I couldn't even talk to him. I think he thought I was ready for the, as he calls it now, the loony bin. Then I read more and I lost it again. I guess my stress level was just totally over the top and all though it may not be so funny to read now it did me in. Nothing we are going through with this disease is laughable but I'm told we must find laughter where ever we can. I guess I did. Again thank you so much.
Jazzy- you are more than welcome. Divvi had a wonderful saying about laughter but it is too early to come to my mind now. I'm reading the second volume of Madeleine Albright's memoirs and she too had a great quote about laughter. Something like no matter how serious our world is, we have to carve out a space, even if it is a small space, to allow laughter in.
You are so kind, thank you. I guess I must have really needed to let go and you helped so much. I now plan to find some new things to be able to learn to laugh again. Our works are so serious and so unpredictable that most times I just want to sit down and cry. I have picked up my knitting again so maybe that is a good start back to some sort of peace.
One of my favorite authors is David Sedaris (humorist). I found that while I was taking care of my husband at home, reading or listening to his books really helped.